CIO podcast: The CIO that survived cancer to build a startup for sufferers

“Nothing can ever prepare you for the words “you have cancer”. It is like a horror movie and your worst nightmare on steroids,” says CIO Avril Chester.

Chester, until recently IT Director for the disability charity Scope, is now Founder and CEO of Cancer Central, a technology startup that will help others with the disease. Cancer Central will bring together Chester’s experience as a business technology leader and her many and painful lessons as someone that has had cancer.

Having studied cyborgs at university Chester followed a fairly typical career in technology leadership working in financial services, travel and academia in PMO roles and then leadership.

“I have been fortunate, I have worked in business and technology which led into global deployment across finance, business travel and insurance. The projects were a mix from things like Chip & Pin to new call centres with unified technology platforms and data,” Chester tells the Horizon CIO podcast Editor and host Mark Chillingworth.

Chester joined Scope in 2016 as interim IT Director. “Undertaking significant technology change across a company wide transformation is unique and particularly special. My role was to get the foundations right whilst reducing IT operational spend by 40%,” she says of her year at the London headquartered charity. “I am extremely proud to say that we reduced the overall footprint by 50%, we implemented Office 365, we moved from on premise to the cloud and moved the telephony by moving to managed technology service. All of this was across the estate including retail. That delivery is happening now, of course there is still plenty to do and I wish my colleagues all the best.”

Before the Scope role though, Chester lived through what she describes as “your worst nightmare”.

“I was diagnosed on December 1, 2015. The cancer had gone invasive and it was high grade and I genuinely thought it was a joke,” she says with her typical breezy friendliness.

“I thought they had the wrong test results, because it was such a shock. I had undergone surgery to remove the lump, I had a wire guided lumpectomy because it was so small. Nothing suspicious had shown up on my mammogram and my biopsy was benign. There was something slightly odd on my MRI scan, hence why they wanted to remove the small lump, just to be sure for the future,” she says.

“It is purely thanks to the persistence and the gut instinct of those in the NHS that I was diagnosed,” she says with great thanks to our national health service.

Chester goes on to tell the Horizon CIO podcast about the arduous journey of having cancer and then returning to health which has led to her startup.

“I had endured a dreadful few years, my marriage had broken down and I had just got a divorce and moved home and I honestly thought I was at my lowest point, and how wrong was I. My world just fell apart.”

“I was 37, it just wasn’t on the agenda, so it was an incredible amount to take in. After the lumpectomy then sent me in for a mastectomy and I had the lymph nodes removed, I thankfully never had to have radiotherapy, but I did have chemotherapy.

“Amongst all of this, I was given 24 hours to decide whether I wanted to have fertility treatment. I was in this horrific situation of realisation, standing in my kitchen and having to learn how to inject my stomach and knowing that my motherhood chances were practically over. So it was an incredibly emotional time. It was a lot to take in, the whole thing. It was difficult to talk, I hibernated, my character changed and I didn’t want to speak or interact with anyone,” Chester says with amazing honesty.

Then the treatment starts. As a CIO Chester was experienced in the complex codified language of business technology, but as she tells the Horizon CIO podcast, nothing prepares you for the complexity of medicine its language and procedures, especially as a patient.

“The language was alien. I felt like an absolute idiot, as if I had learnt nothing in my previous career or school days. I was given a fantastic book by Breast Cancer Care that was full of pages and pages of phrasing, but it goes in one ear and out of the other, you are in no place to absorb it. Plain English is needed now more than ever. I wasn’t in charge of my life anymore, the appointments were. I lived in great fear. You do have that question am I going to die?”

“Each and everyone of us will respond differently to diagnosis and treatment. And if I can offer any advice, never ever compare. Only focus on you and what you need. Take control of your life during this time. It is very empowering.

“It is also important to note things do not finish after treatment. There is a proven fact that a significant number of people face depression and have a real dip following treatment,” she reveals.

“You are in that fight, and you are on the go, and you are full on and then that is it. Then there is this realisation of the enormity of what has happened to you. And an expectation that you will snap back to your old self and pop along and carry on as normal. In my case when I got out the other side I was a stone heavier because of all the steroids, I had one boob and I was bald, not exactly the attractive thing I was looking for,” she says with a laugh, amazingly in the circumstances.

In my experience CIOs are generous and outgoing yet as Chester reveals, surviving cancer can at times be a very insular and lonely experience and therefore at odds with being a CIO.

“We are here to deliver for others,” she says of being a CIO. “And suddenly it is about me and I am at the centre and I find it very hard, and I still do when I need to take a break and have a rest, it is very hard,” she says.

“As my prescription keeps reminding me, I am on Tamoxifen until the summer of 2026 and I have Osteoporosis. And this is the point – you need a community at every stage, because once you finish those major stages of treatment, there is a whole new level that you have to learn to live with and how to live with the fear of it reoccuring.”

Lessons lead to startup

But as ever with inquisitive minds, the experience of going through cancer treatment and recovery gave Chester insight and an interest in developing a solution.

“There are many business, charities and organisations delivering great products, support and services to those affected by cancer, but the challenge is, they are really difficult to find in times of need.

“You have no idea what the keyword search is and you have no idea if the latest information is accurate and up to date. For example: It never occured to me to type into Google: ‘cancer patient under 40 nice day out’. But by chance a friend talked to me about the Willow Foundation and they offer such things.

“Boots have trained advisors on the No7 counter who deal with specific makeup because your skin changes, that is a small fraction of what is out there that is just not being accessed by people,” she says of the nationwide pharmaceutical retailer.

As a result Cancer Central has been born, a social enterprise and startup that aims to offer a technological glue to the myriad of needs that not only cancer sufferers have, but those around them too.

Chester describes it as a “central website, so when you look at the website it will give you national and local results based on your postcode and it will be a trusted source of information because it will have reviews by customers and professionals and you will also be able to filter by cancer type, age and gender”.

“It is about finding it in that one place. One of the things I found is, why can’t I see what is available to me in a map form, near my home, reviewed by others?”

In the conversations I have had with Chester what fascinates me is how much empathy she has for those related to and around cancer patients.

“It is an extremely difficult time for all. I have spoken to many people and we all know this horrific disease touches an incredible amount of lives. There are parents that are desperate to find information to support their child, similarly there are children with parents living afar and when they visit they want to organise things from another county and they don’t know what is going on. So friends and family have a willingness and hope and desire to help and they just don’t know where to start,” she says.

“Cancer charities have done an amazing job. What I really want to stress is that Cancer Central is not about replacing anything out there,” she says of hub nature of the startup. Cancer Central will thus provide access to products, including: hats, wigs, nutrition books and insurance; services such alternative health and respite care, research and support.

“It is important to be able to find what is local to you, sole traders, charities and local associations. I have an incredible memory of mum and I sitting with a cup of tea in front of the computer and it took hours to find a hat, it surely can’t be that hard, I wanted to go and try them on.

“There is a fantastic opportunity to build Cancer Central from the outset with AI intelligence at its core to understand and provide a personalised experience in a confidential way and guide people to things that they wouldn’t naturally think of. For example: I am in need of a pick me up, would you like to answer a set of questions or are you comfortable for Cancer Central to access your social media profile? This could allow interactions such as a playlist. Why don’t you listen to this now or take it to your chemo session. You like Marvel films, there is one at your local cinema at 3pm, why don’t you pop along or there is a coffee morning. All of these interactions can help on the journey.”

Avril Chester (Pic Mark Dimmock)

Setting up Cancer Central

Chester has been focused on Cancer Central full time since January 2018 having completed her role at Scope. The organisation will not be a charity but a Community Interest Company. A hackathon in association with eSynergy Solutions will take place on April 18 at the SkillsMatter CodeNode, home to the Horizon CIO podcast’s first Innovation Leadership Summit.

“Building algorithms is not my forte,” Chester says of using a hackathon. As for being a CIO turned startup focused on the worst moment in people’s lives she says: “I firmly believe I have gone to hell and back again for a reason. And I understand technology and I am incredibly fortunate to have incredible people in my network. Technology gives us a real opportunity to make a difference to millions of people.”